Wednesday, January 18, 2012

This video was taken on our last day in the hospital! I think the spaghetti-mouth just adds to the song!

Ms. Destiny Ann improves each day!

On Monday, she practiced writing the alphabet...now this is not an easy feat for this little girl, but she did it happily!

Notice her new highchair - known to her as her table rocket chair. Notice her "Princess Crown Helmet" and her sippy cup! This child loves them all!! - She truly has the best attitude and i am so lucky! (Her mama is still adjusting to the changes...fortunately these things mean something entirely different to Desty than they do to me.)

Things change, we evolve and Life Goes On.

On Tuesday, we woke Desty up @ 9:45AM, and had her try Patchwork from 11-12:30...This was the first day after Patchwork that she hasn't fallen asleep in my arms @ pick-up!!!! And I kept saying, "she looks so good!"

She then went with Jamie, our Super-Sitter/LPN and continued to have a good afternoon and evening, and only taking brief cat-naps.

I, on the other hand, napped deeply for 4 hours!!! I finally woke up @ 6PM screaming, "Where's Desty?". PTSD! I thought it was AM and Desty was gone...I forgot I took a nap!

Saturday, January 14, 2012

My jaw dropped and I wracked my brain for some piece of significant medical information that I had forgotten to tell all the dozens of medical people I had spoken with. Our attending, Dr Nell, said this our second or third morning here at Children's Hospital in Denvrer. Was she gonna put me to shame in front of all of her resident mob?

Then she told everyone about this site and my efforts to pay for Stripentol, and of my love for and determination to help Destiny. She had spoken to our Pediatrician that morning, whom she referred to as "quite the character". I love Dr. Doody beyond words...He is the picture perfect pede!

This meant a lot to me...I was able to express my love for this child openly and appeal to the senses of these future doctors, and beg them even harder to figure it out and save my Destiny. It gave me a chance to breathe, trust and to see our residents compassionate faces, when not in the midst of crisis.

Destiny was admitted through the ER on late Tuesday night. She was unresponsive. I'm not going to get into many details here...just share some reflections and pictures. The short of it is that is toxic on Depakote, thus on ammonia also, and it basically shut her brain down from last Saturday on. Much more complicated than I care to discuss ever again for the rest of my life!

There's been a few frightening moments, I.e., when it took 25-minutes of sternal rub to awake my Princess...usually it only took 10-minutes! Or the few days she was awake for 30-minutes total. Or when her blood pressure dropped very very low. Or when the doctors/future doctors kept saying, "We don't know yet...we have no answers..."

There is one thing that really brought me back, made me glad to be me, in those excruciatingly dull days. The choppers. Oh, I despise the sound of them! We're on the 9th floor; they are very close. I dunno...is it bad of me to not really think about the child in the chopper, but to feel heartbreak for whoever was left as the chopper flew away? I pray for the mother, father, siblings of the child landing on the roof. I realize that my child and I arrived here in our van, and we will leave the same way.

Finally, I think about our Dravet brothers and sisters who are frequent flyers, and I gain further acceptance that the possibility of me being the one left on the ground to chase the chopper in my van is increasing. This is good though; I really do better when I'm prepared. It's 45-minutes from my house to the hospital.

Okay! That was intense!

Now for a couple of funny stories!...All of you Facebookers know this story, but some of my blog followers are not on Facebook....On Friday, I was weakening emotionally, my tears were release! Very little progress had been made, I was beginning to doubt the expertise of the staff, I was so exhausted, etc. That afternoon, my son, my dog and my friend arrived. I went down to get them and GET THIS! Tank came in, no questions EVER! I hid my son in a wagon, covered him with blankets and bags to hide him & sneak him in!!! That was sooo FUN!

And we almost got CAUGHT by a rather stern nurse as B was climbing out of his wagon.

Desty was awake, eating and looking good at the time. Silly girl says, "Where's Benny?" (hello! Like the first time she's coherent!!) then she looked past me and said, "Oh, there he is". Oh man! Her speech is so sluggish, I don't think the lady fully got it but she did try to look around, Buck jumping in front of the Sneak! Benny's grin priceless!!

The hospital has a 'no visitors under 14 rule' for good reason (I guess!) but this is his sister!...and you know I'm a non-conformist! ;-) This will be a fond memory!

And so will my memory of Harry, our neuro med student. From the very beginning I was annoyed by his presence! I felt it a huge waste of time that they would send in a med student that was completely ignorant about Dravet, if not everything, to give me updates from neurology and answer questions that he had to take back to the real doctors. I challenged the poor guy...and he ended up rising to the challenge, though I think it was a painful process! His second day I corrected him on the difference between Clonazepam and Clobazam, then I mentioned to his boss that maybe he needed to know that. (YIKES! Ok! I was so stressed! I didn't want him to be in ANY trouble, but I wanted him to know the difference ;-)

Instead of hating me, Harry came back so genuinely eager to help us, and to listen to me, my concerns and my pleadings. He learned about Dravet, the drugs, and took a sincere interest. He is eager to learn details that he may never need to know again, and listen to crazy parents with information. By Friday, he sat in a chair beside me, telling me what he learned about Dravet Syndrome, taking final notes about contraindicated medications for Dravet. He does a rotation in the outpatient neurology department beginning on Monday...I hope to see him and show him that he was right: my little girl just needed time.

Desty has come a long way,

and I thank my Dravet family who told me to rush her in, Buck for sticking with us, Harry and the residents, the nurses and doctors who really did their best to help my baby, the many friends who took care of Benny, Tank and Fishy, got us clothes, food, Patchwork for supporting Benny, and all of the prayers and thoughts from everyone via Facebook!

Tonight Princess Destiny is fully back to previous cognition, speech and energy, and her ataxia has made significant gains today! The detox worked!!!!!!!!! Outta here tomorrow, guys! Homeward Bound!

I hear a chopper...

All I can ask now is that people keep donating when you can to Destiny's Stripentol Fund!!!